TOPIC: Someone talk

has anyone ever wonder why us have to get this disorder? I'm Maddie and 16 years old and about a month ago I got diagnosis with ITP had all the symptoms of it and had only two thousand platelets! I first started taking prednisone at 80 mg didnt do anything and I had all the side effects of that medication: like headache, craving for food and all that junk. Recently I started the drug ritux its a chemo drug... and it can take up 12 weeks to make my platelets settle thing is.. my platelets are always so weird like one day it will be 25,000 on a blood test then we gotta go again and it will be down to like 7000 and the bad thing with this ritux it makes me really sick... My Valentines day gift was spending it in the hospital getting a IVIG and the day after..so I wish I knew more people who could help me out with how I feel. I'm up to talk with anyone soo write back and I'll get back with you as soon as i can.

Sandi
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Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
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Maddi:

There are not many teens on the Forum. I'm an adult with ITP.

ITP can be an unpleasant disorder, but it's not the worst thing that can happen. You just have to remind yourself that things could be worse. There are a lot of people with ITP - adults, teens and children, even some babies.

I always thought "Why not me?" Bad things happen to good people all the time. It isn't fair, but that's the way life is. The good thing about ITP is that it is managable for the most part and most people can achieve a remission.

Rituxan isn't really chemo - it's immunotherapy which means it only targets certain cells (B cells), not all cells like true chemo does. You won't lose your hair or have the typical chemo side effects which is good!

Counts do go up and down a lot with ITP and hopefully, your counts will respond to Rituxan and you'll start living a normal life again. I have my fingers crossed for you!

Maddie,
I am also 16 and have also been diagnosed with ITP.My platelet levels go down to around 2000
Like you I am having IVIG treatments but they are only to temporarily boost my platelet levels,they also make me feel terrible :/ but i am going to Plymouth nuclear medicine dept. in a couple of weeks to see if the can find out what is destroying my platelets...

I know exactly how you feel hun. I remember thinking why had i got this so young? why cant it just go away?? But, in the end I thought that what happens happens and you've got to make the best of what you've got. Now I focus on the things that make me happy in life, like my friends and family:) Of course I look after myself but I make sure that I'm enjoying life. I've definitely found that having my friends around me and supporting me helps a lot. It's good to look at the positives in you life and (within reason)try and not to let ITP control your life.

I think that all the time I was diagnosed 2 years ago I've had 11 ivig treatment retux whinrow and steroids and I've gotten all the side effects with it I missed most of my senior year of high school I spent christmas easter and thanksgiving in the hospital I'm scedualed to start chemo in a couple weeks and another ivig treatment next week so I know how you feel I've been, there I hated missing out on so much but when you still have time for it to chang it's not considered cronic till about 6 to 12 months after diagnosed and it dos get better when you figure out specific things that happen when your counts low and your not alone ik it feels as if your drownding and and theres a, million people there to help and you just cant seem to grab ahold but just stay strong things will start to look up

I am right there with you Maddie. And to all who feel the same. I'm 19 now and I've had itp or have known I've had itp since I was 7. Though I've been lucky enough that I haven't had a treatment or any complications in a few years *knock on wood*, but I always worry that my luck will soon run out. I look back now and it does make me sad that I missed out on a some things because of having itp, but I try to look at it in a learning aspect now. I'm in college studying to be a nurse and going to the hospital all these years have kind of helped lol But I too do have those moments where I think "Why me?" and "Do I really deserve this?" But unfortunately, we're stuck with it until our bodies decide otherwise. Just keep a positive attitude and know that you will get through whatever life throws at you

Sandi
Forum Moderator
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
Last Count - 344k - 6-9-18

Posts: 12439

Karma: 11

Thank you received: 2321

Gracie:

There is a good chance that you will have a remission. You might have to keep treating until you find a treatment that will give you a remission, such as Rituxan.

Even if it doesn't go away, many people learn to live normal lives despite ITP and can achieve many great things. You don't have to give up your dreams, but you may have to alter them a bit. Try to focus on the positive things in your life, like your family and friends, and do things that make you happy. Have fun. Don't let ITP get you and don't let it take over your life. You can control your attitude and having a good attitude can make a huge difference.

Im Nameya… Im 14 years old and I have had ITP since 2007.. Its hard to confess about it to everyone.
When I was in Grade 1 we specifically asked my teacher to just keep it a secret until I was ready and Matured to tell my friends about my Chronic ITP but unfortunately she told the whole class, from that day till 2013 I was bullied about my scars and bruises that were on my legs and still are. I always wanted to change my body in that way to remove the scars and the petechiae on my chest. I was so insecure.. I often had mood swings and appeared depressed quite often, i started to become a hand full for my family and my friends because of this. I wanted to be left alone and i came of lets say b*tchy towards them and i lost most of my friends… I hate this disorder and i often feel.. "WHY ME?? What did i do to deserve this its not fair"
But now i have learned to live with it.. There is someone very special and close to my heart that i can relate to about my situation since he suffers from a similar chronic disorder..
Im not saying everything happens for a reason but I can say that ITP has been depression, a blessing and a lesson…
Thanks,
Nameya

Hi guys, I am 15 and I was diagnosed with ITP over 4 months ago. Its been a hard rollercoaster during this time. Ive been on Prednisolone every time I start bleeding somewhere new but it doesnt work as well as it used to- my platelets haven't been above 10 for 4 months. Ive tried ivig and that didn't work. The doctors want me to try 2 days of ivig with Prednisolone. I then want to try the n plate when I turn 16. This is a tough ride, and I would love if someone could please talk to me about this stuff as it would be nice to know I am not alone.

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